Medicare now covers these conversations, but doctors cite a lack of support systems and training — and many just don't know what to say

April 14, 2016

While virtually all doctors who see Medicare patients consider end-of-life and advance care planning conversations important, many physicians report significant barriers to having these discussions with their patients, and nearly half (46%) report that they frequently or sometimes feel unsure of what to say, a new national poll finds.

Advance care planning helps people learn about their health care treatment options, figure out the type of care they want, and share those wishes with family, friends, and providers — ideally in writing and as part of a patient’s electronic health record. People should feel empowered by these conversations and by knowing their wishes will be heard and respected.

In January 2016, the Centers for Medicare & Medicaid Services began reimbursing doctors and other professionals for leading these discussions. The benefit covers multiple conversations and is not limited to patients close to death.

A 2015 poll from the Kaiser Family Foundation found strong support for this benefit among the public (80%). The new poll finds physicians also overwhelmingly support the new benefit (95%), though only 14% report they have billed Medicare for an advance care planning conversation since reimbursement began three months ago.

The survey — “Conversation Stopper: What’s Preventing Physicians from Talking with Patients About End of Life and Advance Care Planning?” — was commissioned by The John A. Hartford Foundation, the California Health Care Foundation, and Cambia Health Foundation, and includes 736 primary care and specialist physicians in 50 states. Specialist physicians surveyed are oncologists, pulmonologists, and cardiologists.

While the long-term impact of the new Medicare benefit remains unclear, three-quarters of physicians (75%) in the survey predict that it would make them more likely to talk with older patients about advance care planning.

“Too many people at the end of life receive care that is completely at odds with their personal wishes,” said Terry Fulmer, PhD, RN, FAAN, president of The John A. Hartford Foundation and a nurse. “The new benefit, with its strong support from clinicians, is a promising first step in ensuring that more people remain in control of their health care experience to the very last day of their lives.”

What’s Stopping the Conversation?

All the doctors surveyed see Medicare patients, and three out of four (74%) report seeing many patients who could die within a year. Most (75%) believe they — not the patient, another doctor, or other health care professional — are responsible for initiating these conversations.

Despite recognizing the importance of these candid conversations, physicians identify numerous barriers that get in the way. Many say they are unsure at times about how to handle the discussions, and:

Only 3 in 10 respondents (29%) report that their practice or health care system has a formal system for assessing patients’ end-of-life wishes and goals of care.

Less than one-third (29%) report having had any formal training specifically on talking with patients and their families about end-of-life care.

One in four (24%) say there is no place in their electronic health record (EHR) indicating if a patient has an advance care plan, and for those who do, a little more than half of respondents (54%) say they can actually access the plan’s contents.

A second phase of the polling project will conduct focus groups with physicians, nurse practitioners, and others on the health care team to explore these and related barriers in more detail.

Training makes a significant difference in physician responses. Physicians who report having explicit training in end-of-life conversations are more likely (46%) to find conversations about end-of-life care to be rewarding than those who have not (30%), and also say they feel unsure about what to say in these conversations “rarely or not too often” (60%), compared to those who have not had explicit training (52%).

“As a primary care physician, I’ve had end-of-life conversations with patients for more than two decades,” said Sandra R. Hernández, MD, president and CEO of the California Health Care Foundation. “As health care delivery becomes more patient-centric, this improvement in communication can relieve significant pain and suffering for patients and their families. These conversations, though not easy, benefit from taking into account the patient and physician’s knowledge, attitudes, and beliefs about end-of-life care options.”

Not “Giving Up” Matters

The survey finds that physicians’ concerns about these conversations also arise from their commitment to their patients. Many say they didn’t want an advance care planning conversation to cause patients to feel the doctor was “giving up” on them (48%) or to “give up hope” (46%).

Similarly, doctors value advance care planning as a way to honor the patient’s values and wishes (92%), reduce unwanted hospitalizations at the end of life (87%), and have patients and families feel more satisfied with their care (81%).

“Reimbursing doctors to have these conversations is only part of the equation. It’s equally important that consumers are empowered by these conversations and feel their wishes are expressed and respected,” said Peggy Maguire, Cambia Health Foundation president and board chair. “We’re grateful for the opportunity to work with physicians to create better experiences for people facing serious illness and their families.”

About the “Conversation Stopper” Survey

PerryUndem Research/Communication conducted the “Conversation Stopper” survey, a national telephone survey of 736 physicians in 50 states who see patients 65 and older. The sample included both internists/primary care providers (N=470) and specialists in oncology, pulmonology, cardiology (N=266). The margin of sampling error is +/- 3.6 percentage points. The survey included an oversample of California physicians (for a total N=202, MOE =+/- 6.9 percentage points).

The survey was fielded from February 18 to March 7, 2016.

About PerryUndem

PerryUndem Research/Communication, a nonpartisan research firm, conducts public policy research for nonprofit organizations, foundations, and government agencies. PerryUndem works on a number of health-related policy issues, including health reform implementation, delivery system reform, health IT, costs, and quality. PerryUndem has briefed numerous state and federal policymakers on their work, including members of Congress, White House staff, Secretary Sebelius, and CMS leadership. For more information, visit perryundem.com.

About The John A. Hartford Foundation

Founded in 1929 by John and George Hartford of the Great Atlantic & Pacific Tea Company (A & P), The John A. Hartford Foundation, based in New York City, is a private, nonpartisan philanthropy dedicated to improving the care of older adults. Every eight seconds, someone in America turns 65. The largest-ever generation of older adults is living and working longer, redefining later life, and enriching our communities and society. Comprehensive, coordinated, and continuous care that keeps older adults as healthy as possible is essential to sustaining these valuable contributions. The John A. Hartford Foundation believes that its investments in aging experts and innovations can transform how care is delivered, lowering costs and dramatically improving the health of older adults. Additional information about the foundation and its programs is available at www.jhartfound.org.

About Cambia Health Foundation

Cambia Health Foundation is the corporate foundation of Cambia Health Solutions, a total health solutions company dedicated to transforming the way people experience health care. A 501(c)(3) grantmaking organization based in Portland, Oregon, Cambia Health Foundation strategically invests and partners with organizations to advance national palliative care quality, access, and understanding; improve the behavioral and mental health of underserved children; and transform health care to a more person-focused, equitable, and economically sustainable system. Learn more at www.cambiahealthfoundation.org.

About the California Health Care Foundation

The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.